Bringing Special Ed to the Fold

When Sydney Taylor entered first grade in 1991, education experts warned she’d probably never learn to read. Today, Sydney’s bedroom shelves are crammed with hundreds of books--the Babysitters’ Club series topping her favorites.

The experts warned that Sydney would be a classroom disruption, incapable of fitting in with “normal” kids. This year, she was elected to the eighth-grade student council.

The experts said Sydney’s developmental level was in the lowest 1% in the nation, that she’d never thrive in a regular school. Next week, Sydney will graduate from Serrano Intermediate School in the Orange County community of Lake Forest. Next fall, it’s on to El Toro High.

Eight years after Sydney’s parents, Duncan and Joyce Taylor, ignored the experts’ advice, their daughter, who has Down syndrome, offers hope to the parents of special needs children caught up in a brewing national debate--how to give disabled students the best education without overburdening the public school system.

The U.S. Department of Education weighed into the fray in March, enacting new standards requiring school districts to make mainstreaming a priority. As a result, schools are required to justify placing disabled students in a more restrictive special education class.

Congress adopted the Individuals With Disabilities Education Act 24 years ago and it required public schools to integrate disabled children into regular classrooms “to the maximum extent appropriate.” But many school districts have traditionally taken the reverse approach, automatically placing disabled kids in special ed classes and asking parents to prove that mainstreaming their child is the best method.

That’s where the Taylors found themselves eight years ago when they insisted that Sydney be fully included in the general student population when she entered first grade at Santiago School in El Toro. The Saddleback Valley Unified School District had a different plan: They’d include her in regular classes for only two hours a day, and only then in art, music and physical education.

The legal battle that ensued lasted six months, and when it was over, the Taylors beat the district--winning back their $20,000 in legal costs in the process. They helped transform their daughter from an 8-year-old social misfit who used to bite other children to a tender young woman who now plants bear hugs on her classmates. And they opened the way for nearly two dozen other severely disabled students to be fully included in classes in her district.

“For the parents who were thinking about it, it gave them much more of a reason to push,” said Gregg Crawford, whose son, Matthew, has Down syndrome and is a fully mainstreamed third-grader in the Saddleback school district. “Once that door was open, many more followed through.”

The Challenges of Junior High

Serrano Intermediate School is tucked away in the eucalyptus-lined neighborhoods of suburban Lake Forest and its hallways are alive with the loud, giggly echoes of 1,376 kids slipping into puberty.

When Sydney entered Serrano in the fall of 1997, the Taylors had their worries. Junior high can be a rough place for any adolescent, let alone a girl with Down syndrome, a genetic disorder that causes mild to moderate retardation and slows physical development. Would boys torment her? Would she make friends?

The answers came as swiftly as Sydney races to her classes.

Decked out in the bib overalls and laced-up Skechers that are this year’s must-haves for teenage girls, Sydney might disappear into the mob of students were it not for her infectious smile and well-known habit of dishing out hugs.

“I like you,” Sydney was quick to tell Shaina Sartor, a seventh-grader who was painting school posters with Sydney for student council. “I like you too,” Shaina said.

Her tender and playful personality has endeared her to most of the students at Serrano. “Everybody likes Sydney,” said Jeff Dippel, 13, a seventh-grader who took a public speaking class with her earlier this year. “If anyone ever treats her mean, people really get on their case.”

But Sydney has a difficult time making close friends in classes, her mother said, a byproduct of being the only special needs student in most of her courses.

Those closest to Sydney are in Serrano’s separate special education day class, which includes about two dozen students with Down syndrome and other developmental and physical disabilities.

Sydney mostly sees them at lunch, or after school because she is the only special needs student at Serrano who is fully mainstreamed.

That’s not the only downside of mainstreaming, or “inclusion,” as it’s called, said Barbara Schulman, head of special education at the school.

Schulman supports the Taylors but believes that developmentally disabled students need special lessons to hone their social skills: how to shake hands, ride a bus or tell the difference between a red and green traffic light.

“Kids should be put in regular classes when possible, but putting kids in social studies is not as important as teaching them how to shop at a grocery store, or to make dinner,” Schulman said.

The Taylors believe it’s their job to teach Sydney day-to-day living skills. It’s the school’s responsibility to provide a challenging academic environment, and a safe place for students to learn from one another.

Some parents of Down syndrome children have major reservations about mainstreaming. They worry that the experience could be destructive to their child’s development, exposing them to ridicule and alienation in the classroom, said Dru Barbee, a counselor at National Down Syndrome Congress in Atlanta.

“Some parents prefer a special ed class for their child, and I think one of the reasons is because of protection. It’s a legitimate concern,” said Barbee, who nonetheless supports mainstreaming.

The Taylors say that Sydney eventually will be forced to contend with the real world and all of its unpleasantness. Mainstreaming helps prepare her for that future, they said.

In general, Sydney spends most of her day in the classroom, working lessons tailored to her abilities.

Recently, her science teacher handed out a two-page quiz asking students to define kinetic theory and other topics related to their weekly lesson on heat. Sydney was given a separate, much easier test: five word jumbles she had to unscramble to form sentences all relating to heat.

“She gets some of it, but in no way is she on the same level as the rest of the class,” her teacher, Cynthia Gannon said. “But, sometimes, she’s surprised me.”

In choir, Sydney was graded on the same scale as every other student when she sang her final, “Puff the Magic Dragon.”

Michael Byrne, the district’s director of pupil services, said there has been a nationwide movement to mainstream special needs students, at least for part of the day, because the latest research shows that it is difficult to teach skills to severely handicapped students in isolation.

Still, there are limits to mainstreaming. Sydney is not required to meet the same academic standards of regular students to complete middle school and still will graduate. That’s not the case in high school. To earn a diploma, Sydney would have to meet the same grade and testing requirements as other students.

The Taylors understand that a high school diploma is almost assuredly out of reach, but Sydney could still earn a certificate of completion--a victory in itself.

The Serrano principal insists that Sydney be assisted by an aide in every class. Although such personal attention can be expensive--upward of $400 a week--the aides help lessen the strain on the classroom teacher.

“My main responsibility is to shadow her, to help her be independent, but with a little help,” said Mary Ellen Mann, who helps Sydney during the morning.

Mann’s job was much tougher when Sydney entered junior high. Sydney was more prone to disrupting other students--spitting water in one case, or clinging to students who wanted to be left alone. Those problems began to disappear once Sydney became more comfortable at school, and heeded scoldings on how to behave.

“I’ve seen Sydney mature this past year,” Mann said. “I’ve seen her interact more with the other students, and make some significant breakthroughs.”

Children With Special Needs

Sydney’s condition was apparent the moment she was born Feb. 20, 1983.

Aside from a “moment’s grief,” Duncan and Joyce Taylor accepted their daughter’s condition as one of life’s many challenges, one they could deal with.

They learned a person with Down syndrome is born with an extra 21st chromosome, which inhibits physical development and causes retardation.

Children with the genetic disorder learn to walk, talk, toilet train and do most other activities--only later than children without the condition. The degree of retardation can vary widely, depending on the individual. In fact, many are able to go to school and hold jobs.

The incidence of Down syndrome rises with the age of the mother, although 75% of babies with Down syndrome are born to women younger than 35, federal health statistics show. It affects one out of every 800 babies.

The Taylors drew on their Mormon faith, and their well-worn years as parents. They were in their early 40s when Sydney was born and had seven children from previous marriages. Sydney was their first child together.

“It would really be very hard to have any feelings of guilt or remorse for having a child like Sydney,” Joyce Taylor said. “I just wish other people could know the blessings.”

Until Sydney reached school age, the Taylors never set foot inside a school board meeting room. But they quickly learned that having a special needs child required vigilance, even though the same public school system provided a generous education for their other daughter and six boys.

“We decided from the beginning we were going to raise Sydney just like we raised our other children,” said Duncan Taylor, the North American product manager for Steelmark-Eagle and Globe, an Australian steel company.

After hearing of success stories in Fullerton and other areas of the country, the Taylors asked that Sydney be fully mainstreamed. The school’s principal and special education instructors proposed that Sydney spend four hours a day in a class for special needs children and be mainstreamed for two hours for art, music, physical education, recess and lunch.

For the Taylors, that was unacceptable.

In August 1991, the Taylors filed for a due process hearing to put the decision in the hands of a state-appointed mediator.

During four days of testimony, the hearing officer listened to Sydney’s parents and Sunday school instructor, her former kindergarten teacher and the district’s special education coordinator. A handful of psychologists and education experts also took the stand, all to answer two basic questions: Was the program offered by the district appropriate for Sydney and, if not, was a regular first grade class the best alternative?

In December 1991, the hearing officer ruled in favor of the Taylors--ordering the district to place Sydney in a regular classroom, and also to pay the family’s legal bills.

Sydney became the first severely disabled student in the Saddleback school district to be completely mainstreamed.

“Sydney’s good attention span, self-control and ability to imitate behavior and social skills, along with her limited cognitive ability, make her a strong candidate for full inclusion,” the mediator, Dorene Giacopini, ruled.

Putting Sydney in a class limited to severely disabled students exposed her to “negative behaviors” and hampered her ability to learn, Giacopini said. In effect, she said, the school was failing her.

Efforts for Total Inclusion

Since winning their court battle, the Taylors said the district has gone out of its way to create a “full-inclusion” program. Today, seven other students with Down syndrome are fully mainstreamed in the district, along with 12 children with autism.

“We are making every effort to include every level of student in regular classes,” said Byrne, director of pupil services. “Right now in this district, we talk to parents about full inclusion and we really stick to what the law says: to provide the least restrictive educational environment to every child.”

In California, there are 640,000 students involved in special education programs and, on average, each child spends 66% of the school day in regular classes, according to the state Department of Education. Rates in Orange and Los Angeles counties are slightly lower.

Although it should be easier to get students fully included in all types of classes, it’s not that simple.

Many school administrators, for instance, still worry that the cost of special eduction is too great and that it could shortchange other students. In California, for instance, the Department of Education earmarks $3.7 billion a year for its special ed students.

On average, educating a disabled student costs $12,000 a year, double the amount of a regular pupil. In Orange County, the special education population has shot up 17% over the past five years, yet funding has remained virtually flat.

“The higher up you go in the school district, the more they look at it more as a matter of dollars and cents,” said Crawford, father of the mainstreamed third-grader who started in the Saddleback school district after Sydney. “They’re always weighing children with special needs against children who are typical. It becomes very adversarial.”

Many parents with disabled children also run into problems with “old school” teachers and school administrators, who have the attitude that students with Down syndrome can’t be taught, said Crawford, president of Parents Regional Outreach for Understanding Down Syndrome, an Orange County support group.

“Sadly, it’s really up to the parents,” Crawford said. “If the parents are willing to fight for their child, they’ll get what they need. If they leave it up to the school district, they’re not going to get much.”

More than anyone, the Taylors learned that lesson the hard way. That’s why they worry that their battle will start all over again when Sydney enters El Toro High this fall.

But El Toro High Principal Jack Clement said he is preparing for Sydney’s arrival, and is planning to do everything possible to give her the mainstream education her parents desire.

“We’re very proud of the fact that we have students who run the gamut of special needs, and who participate in a full and active student life,” Clement said.

Even with Clement’s backing, the Taylors don’t expect Sydney’s move to high school to be problem-free. With 2,600 students, it’s twice as big as her junior high. Students are older, and the perils of sex, drugs and impending adulthood are more pervasive.

“High school is the big leagues,” Duncan Taylor said.

When Joyce Taylor questions what she and her husband are doing for Sydney, she thinks of her 52-year-old younger sister.

Severely brain damaged at birth and considered “profoundly retarded,” her sister spent most of her life in an institution in the South--segregated from men.

Then, in December, she moved to California and lived with the Taylors for a month. Joyce was shocked to find out just how capable she was. Today, her sister has a job at a local cable company, and is building a friendship with a man living in her halfway house for the disabled.

“Here’s a person who was totally misdiagnosed, and most of her life was wasted because of it,” Joyce Taylor said. “I couldn’t let that mistake happen twice.”